Orginally Posted on Madam Bipolar for Autism Awareness Month. Yesterday at speech therapy talking about my daughters progress made me think of this post and I knew it was time to share here … You can find the orginal post here.
Yesterday when I was picking up my daughter from daycare I saw a little boy in the playground that when he saw his mother arrive gave her the biggest smile, ran over to her and yelled ‘I love you’. I could not help myself. It just made my eyes well up. They are only just three little words but three words most parents with children on the autism spectrum want more than anything to hear – I love you.
We can hear them say it with their actions and believe it with all our soul. But we may never hear it spoken from the lips of our children. Some children can’t speak. Some may never. Some may communicate needs and desires with aids like pictures. And others are able to babble about topics of interest but find it difficult to talk about anything else.
My son speaks very little. He tends to talk under his breath and come out of words of things that are of interest like names of his favourite. Thomas Trains or observations like car, wash (for anything related to water including rain, baths, showers, pools). Sometimes he will say ‘Mum’ and ‘Dadda’. Occasionally … Very Occasionally … you will get a sentence. Just before Christmas the said “I want water” and during the holidays he said just before bed “I want watch Thomas”. But these are rare and far between. He communicates primarily using the Picture Exchange Communication System (PECs). With this he can communicate his wants and needs. And for this we are lucky.
And while he can not say the words ‘i love you’ he tells me in a hundred different ways. He tells me he loves me with his big bear hugs and beautiful big smiles. He tells me he loves me when he climbs onto my lap after breakfast to have a morning snuggle.
In some ways I find it strange as I can (and often do) talk underwater and for hours. I love to talk but this basic and simple form of communication is the hardest thing in the world for my son to do. For me understanding this has been one of the hardest aspects of helping his with his autism as communication affects all aspects of his learning, behaviour and social interaction. However I am learning to accept, respect and value of alternative methods of communication like PECS. This is my challenge and not his. I think that the ability to express yourself and be heard with the communication method of your choice is a human right that needs to be protected. I believe that all people with a disability of any extent or severity have a basic right to affect, through communication, the conditions of their existence in whatever manner works for them.. I agree with the the Communication Bill of Rights put forth in 1992 by the National Joint Committee for the Communication Needs of Persons with Severe Disabilities.
Each person has the right to
- request desired objects, actions, events and people
- refuse undesired objects, actions, or events
- express personal preferences and feelings
- be offered choices and alternatives
- reject offered choices
- request and receive another person’s attention and interaction
- ask for and receive information about changes in routine and environment
- receive intervention to improve communication skills
- receive a response to any communication, whether or not the responder can fulfill the request
- have access to AAC (augmentative and alternative communication) and other AT (assistive technology) services and devices at all times
- have AAC and other AT devices that function properly at all times
- be in environments that promote one’s communication as a full partner with other people, including peers
- be spoken to with respect and courtesy
- be spoken to directly and not be spoken for or talked about in the third person while present
- have clear, meaningful and culturally and linguistically appropriate communications
They all sound pretty normal requirements … fairly basic. But even within Australia many people with Autism and disabilities that affect communication these rights are not recognised, respected, protected or upheld. I would like to see this change. And whether a person communicates with their voice, an alternative communication tool like PECs, Proloquo2Go, LAMP or Sign Language that they are respected for their choice and are able to be part of our world wide conversation.
